Any insight into Rebif Plz

Hi everyone, hope you are all as well as can be!

I am due to start Rebif in 4 - 6 weeks and would love to hear how people have got on.

Look forward to hearing off you.

Thanks Sonia x

Hi I started rebif just over six weeks ago. I had two weeks on 8.8 then two weeks on 22 and just started third week on 44. I use the Rebismart gadget which with my right hand not working properly I find so useful. Bit tricky getting needle in and out but injecting is a lot easier. I do suffer from flu like side effects but I am hopeful it will not last forever (just feels like it at the time! Lol) I have found that by moving injection to earlier in the evening I recover quicker the next day. I personally have to go to bed 1 - 2 hours after injecting because I start to feel poorly but it can effect people so differently. You never know you might be one of the lucky ones. I only have one site, on my arm, that so far seems to have come up in a red splodge (attractive - lol) but I have been quite lucky with that so far. It stings a little bit but not every time. They give you a pack to heat or cool to put on site after. I heat mine which works best for me. My hand seems to feel permanently frozen and painful at this time of year so adding more cold is not good. Fingers crossed it goes well for you. Mish x

I’ve been on Rebif since June 2011. The good news is that I’ve been relapse-free in all that time, so it is working really well for me :slight_smile: The bad news is that I am one of the unlucky few who continue to have side effects long after most people’s have worn off :frowning:

Taking ibuprofen and/or paracetamol with the injection and then every 4 hours (max 8 pills of each a day) really helps so make sure and stock up! I had no problems at 8.8mcg (the first couple of weeks) and mild problems at 22mcg, but 44mcg hit me like a steam train. I struggled with insomnia too in the beginning so ended up injecting in the morning - this has the benefit of me rarely if ever forgetting to do my injection on the right day, but the downside of having the whole day with side effects. To be fair, the side effects aren’t that bad any more and paracetamol is enough to deal with most of them; I’d just thought that I’d have been able to give them up by now :frowning: Instead, I have them on repeat prescription! Trust me to not be one of the people who doesn’t get any side effects at all!

I still get big red splodges and bruises too. I was covered in them in the early months - I once stopped counting at 22! Changing the Rebismart settings to go in faster and deeper and to take longer to release the fluid has helped though and I don’t get anywhere near as many any more.

I reckon bruises and lots of paracetamol are a worthwhile sacrifice for no relapses though!

I hope it works brilliantly for you.

Karen x

Hi, I started Rebif at the end of November. Started on 22 and increase to 44 in 6 weeks time. I too suffer horribly with the side effects and like Mish I inject around 6 pm to give myself time to have 2 lots of tablets before lights out. The side effects for me are really awful BUT not worse than the relapse I had in March that led to me being diagnosed. I also have some very attractive bruises and red marks, bikini days are over!! My injection nurse has been fantastic and phones every couple of weeks and came out today to check how I am getting on. She is also coming back on the day I start 44 to make sure I am ok. She reckons not to give in and to persevere with the side effects (and the paracetamol!) as they should become less and less each time. Good luck. X

Hi, I’ve been on it 10 weeks. I had to stay on the 22mcg for a couple of weeks longer than planned as I was relapsing at the same time & felt so rough. I really felt the flu like effects at 22, but didn’t get them much worse on 44mcg. Like the others, i have the red splodges that last weeks! I started on the Rebinject, but actually do most of my jabs manually now as I can slow the speed at which the drug is fired into me! I was a needle phobic, but don’t give my jabs a thought now. I also do my injections earlier (2-4pm) to try to negate the effects the next day. I take 2 paracetamol 1 hour before, then 4 hourly afterwards. I take slow release long acting ibuprofen at bedtime too. Whilst paracetamol helps ward off the chills, ibuprofen is more effective on pain for me. Without it, I felt like I’ve been run over several times. I also had some sleep disturbance early on, but that seems to have gone. Good luck. Anne

Thank you for your replies, i must say i’m not looking forward to the bruising as i am on Warfarin lifelong

so as you can imagine i bruise terribly anyway without sticking myself 3 times a week lol.

I would of been happy to inject the once weekly into muscle but this is not an option with my blood disorder.

Oh well at least if i expect the worst now then i can only be pleasantly suprised ( i blooming hope).

I’m glad paracetamol are already on repeat too due to not being able to take ibruprofen.

Thanks again sonia x